Artwork

Innhold levert av FSHD Straight Talk. Alt podcastinnhold, inkludert episoder, grafikk og podcastbeskrivelser, lastes opp og leveres direkte av FSHD Straight Talk eller deres podcastplattformpartner. Hvis du tror at noen bruker det opphavsrettsbeskyttede verket ditt uten din tillatelse, kan du følge prosessen skissert her https://no.player.fm/legal.
Player FM - Podcast-app
Gå frakoblet med Player FM -appen!

134: Minutes Matter: Early Onset Advocacy with Ally, Debbie & Kristin

1:01:34
 
Del
 

Manage episode 446470091 series 3410030
Innhold levert av FSHD Straight Talk. Alt podcastinnhold, inkludert episoder, grafikk og podcastbeskrivelser, lastes opp og leveres direkte av FSHD Straight Talk eller deres podcastplattformpartner. Hvis du tror at noen bruker det opphavsrettsbeskyttede verket ditt uten din tillatelse, kan du følge prosessen skissert her https://no.player.fm/legal.
In this illuminating roundtable, Tim talks with Ally Roets, Debbie Eggleston, and Kristin Zwickau, the passionate moms leading the Early Onset Chapter. In addition to discussing how differently FSHD progresses in kids versus adults, Ally, Debbie, and Kristin touch on their past and upcoming advocacy efforts, the importance of changing clinical trial designs, and parenting in rare disease spaces. When FSHD progresses relentlessly and quickly, minute matters. As Ally said at the end, these moms are tenacious, not going anywhere, and going to get treatments and a cure for their kids.
  continue reading

148 episoder

Artwork
iconDel
 
Manage episode 446470091 series 3410030
Innhold levert av FSHD Straight Talk. Alt podcastinnhold, inkludert episoder, grafikk og podcastbeskrivelser, lastes opp og leveres direkte av FSHD Straight Talk eller deres podcastplattformpartner. Hvis du tror at noen bruker det opphavsrettsbeskyttede verket ditt uten din tillatelse, kan du følge prosessen skissert her https://no.player.fm/legal.
In this illuminating roundtable, Tim talks with Ally Roets, Debbie Eggleston, and Kristin Zwickau, the passionate moms leading the Early Onset Chapter. In addition to discussing how differently FSHD progresses in kids versus adults, Ally, Debbie, and Kristin touch on their past and upcoming advocacy efforts, the importance of changing clinical trial designs, and parenting in rare disease spaces. When FSHD progresses relentlessly and quickly, minute matters. As Ally said at the end, these moms are tenacious, not going anywhere, and going to get treatments and a cure for their kids.
  continue reading

148 episoder

所有剧集

×
 
Loading …

Velkommen til Player FM!

Player FM scanner netter for høykvalitets podcaster som du kan nyte nå. Det er den beste podcastappen og fungerer på Android, iPhone og internett. Registrer deg for å synkronisere abonnement på flere enheter.

 

Hurtigreferanseguide

Copyright 2024 | Sitemap | Personvern | Vilkår for bruk | | opphavsrett